NHS Autism Report suggests the increase in autism in recent years was all down to an oversight …

Polly Tommey is the mother of a thirteen year old son with autism.She is also the Editor of www.autismfile.com. In both roles, as a mother speaking with other parents day in, day out, and as a journalist dealing withconstantly increasing numbers of calls describing personal crises for the lastten years, she has had direct experience of the increasing pressure being causedby the numbers of people dealing with autism.

Polly, like many others, has also attended conferences, seminars and workshopsworldwide for the last decade and has heard endless research reports and debates on what is the cause of the increase in the prevalence of autism in countriesacross the world.Statistics citing 5 in 10,000 with autism in 1990 increasing to 1 in 100 today have been used bymany from all backgrounds. However it ‘appears’ that it was all now a mistake and that there has been no increase at all … the apparent 95% step up was simply down to an oversight, a lack of awareness and non-diagnosis.Autism isn’t a new problem at all, we’ve had the same level all along – and perhaps, if the data is critiqued, it is actually in decline!

Scepticism surrounds the interpretation of this new report … “Why on earth did this ‘ground-breaking’ news get forced up the news bulletins in the way that it did on Monday evening here in the UK?”, asks Polly, “Are we really able to believe all that we hear on such important subjects, or is there a stronger hand with adifferent agenda behind it?”

A review of the detail behind the headlines will enable any objective reader to draw their own conclusions …

According to a National Health Service report published yesterday (Sept 22nd) 1 in 100 adults in theUK has an Autism Spectrum Disorder (ASD). The report was based on adults living in households throughout England and the assessments were done in two stages. Stage One asked individuals to rate how well they agreed with 20 statements about their likes, dislikes and abilities – such as whether they preferred going to ‘libraries’ or ‘parties’. Stage Two involved a clinical interview designed for adolescents and adults with fluent speech. No-one in thestudy lived in supported accommodation or residential care; everyone in thestudy was verbally fluent. Nonetheless, 1 in 100 had an Autism Spectrum Disorder?

Subsequent news reports are claiming that these figures match the numbers already identified in children, however the children’s figure includes less able, less fluent and non-verbal children. If the full range of ability had been included in the NHS report, alongside the verbally fluent, high functioning adults living at home, there would surely be far more than 1 in 100. So, either there are more adults than children with an ASD and autism is on the decline(!?) or there is something wrong with the report.

Polly comments, “The irony for many families in the UK is that in order to get support for a child with an ASD you have to wait over two years for a diagnosis; if you wait long enough, eventually you will be asked to spend several hours talking in detail about your child’s development, his present behaviour, his speech,language and cognitive ability. You will need to have your child observed athome, at school, in the playground, in the classroom, and then you will need tostart the long process of applying for a Statement of Educational Need to makesure he gets the educational provision he needs. If this fails, which it oftendoes first time around, you will need to do it again, maybe with legalrepresentation, and a significant hole in the bank balance.”

Polly cynically concludes, “So, perhaps the report is good news. Maybe now, ASD diagnosis will be based on a few questions about whether you like ‘libraries’or ‘parties’ best, followed by a 30 minute chat. One thing is clear, however, the report has no relevance to children withautism like my son Billy and the many thousands like him. These are children who the system has so far failed and who, unless something is done now, certainlywon’t be coping as adults, in ordinary ‘English households’, or responding to self-report questionnaires about their social nuances.”

Whatever claims are made to the contrary this report tells us very little about the number of adults with ASDs – inEnglandor anywhere else. The main problems with the study are with (a) case-definition, (b) ascertainment (c) diagnostic instruments (d) case identification and (e) statistical power.

There is no clearly stated case-definition anywhere in the report. The cases reported are defined loosely in terms of an initial score on a shortened unstandardised non-peer reviewed version of ascreening tool together with a semi-structured clinical interview – the Autism Diagnostic Observation Schedule (ADOS) – that was not designed to act as astand-alone diagnostic instrument.

The sample selected is not representative of the ASD population. All participants were verbally fluent, living in ordinary households, and able to complete a self-report questionnaire.

The choice of measurement tools is inadequately justified and badly referenced. No details are provided, nor are any sources referenced, on the psychometric properties of the initial screening instrument (AQ-20). The standardized scoring criteria for the ADOS were not followed (using a total cut-off of 10 for Communication + Social Reciprocity, rather than three cut-offs (respectively) of 3, 6 and 10 for Communication, Social Reciprocity and the two combined). Additionally the authors over state the validity of the ADOS as a tool for use in adult populations. Module Four (used in the study) was standardized on a sample of only 70 adults aged between 16 and 44. Ages in the study sample range from 16 – 75.

The technical appendix, which is intended to provide information about the derivation of the AQ-20 is statistically naïve, unclear and potentially inaccurate. It is not clear for example, what is meant by the phrase on pg 16 of Appendix C "….once the final set of predictors had been selected, a regression equation was available for predicting the prevalence of ADOS." Neither is it clear whether General Linear Modelling, Linear Regression or both were used to derive final items.

Finally, inferences are made about the lack of a significant association between age-groups and ASD prevalence without reference to statistical power. In a study of this size, with only 19 identified (unweighted) cases, the likelihood is that the study was underpowered to detect such differences.

A valid and reliable study of the population frequency of a disorder requires clear and robust case definition, validated instruments, standardized procedures and adequate statistical power. An initial evaluation of this report suggests it fails on all counts. A further much more detailed critique is currently being prepared and will be featured in The Autism File Magazine: Scientific Review early in the New Year.

Robin --
"he knows whats coming once the American Press smell the blood"

Sadly, I think you are seriously overestimating the American Press. They've been completely feckless when it comes to vaccine issues; they are too beholden to pharma advertising dollars and stock options. They have been complicit in training the American public to regard anyone who questions the safety of vaccines as a village idiot. We are viewed with an unvarnished contempt. You might have the most explosive document in the world, but you are right that "few would believe it" because the media will never present it in a way that leads people to believe, let alone be outraged. The cognitive dissonance is still too great between what people have been taught to believe about vaccines and their sad reality. They still can't wrap their heads around Simpsonwood, and that was ten years ago!

I don't know what you know - or at least don't have any specific idea of what it is, and I am certainly not wittingly party to any state secrets. There are, of course, many appalling things which are not state secrets which are also not reported. You may also be right that the use of D notices is more widespread than I thought.

It wouldn't surprise me given what is in the public domain, that what isn't would be vile beyond words.

"We do have an example of an editor of a national newspaper, Roger Alton, losing his job over MMR when in July in 2007 ahead of [the GMC hearing] the Observer published alarming figures about the autism rate. The Observer was pilloried by a journalist (Ben Goldacre) from its sister newspaper, the Guardian, by study author Simon Baron-Cohen and Fiona Fox of the industry lobby group Science Media Centre, though subsequently the story proved to completely correct:"

Many thanks for your remarks. First of all let me say that I am not the author of this article, which has caused confusion on other sites. Let me also say that my opportunities to drink with journalists are few and far between these day.

For the benefit of American readers I should also explain that a D notice, or more correctly these days a DA notice is an injunction forbidding the reporting of certain matters for security reasons, handed out by the UK Ministry of Defence. I have never really been sure how relevant this is to vaccine issues because my impression is that media discipline, which is powerful but not absolute, is largely maintained by other means - but it is also the case that in some instances things that are widely talked about, virtually never come out through mainstream media sources.

For instance, it was never reported over years that the child of Sally Clark died 5 hours after receiving 5 vaccines - although the media wept buckets over her wrongful inprisonment for the infant's murder and after her death, they never reported this basic fact. But then there was an article in the Spectator, which is a mainstream source, and this was even available on the web for two years, though I note it has recently been removed.

Another example of the press not reporting was in April of last year when before a number of senior journalist's Andrew Wakefield refuted the allegations of Richard Horton before GMC, and only a rather weasel report emerged in the news columns of BMJ, downplaying its significance.

We do have an example of an editor of a national newspaper, Roger Alton, losing his job over MMR when in July in 2007 ahead of the Observer published alarming figures about the autism rate. The Observer was pilloried by a journalist (Ben Goldacre) from its sister newspaper, the Guardian, by study author Simon Baron-Cohen and Fiona Fox of the industry lobby group Science Media Centre, though subsequently the story proved to completely correct:

So, for all I know Robin may be right about some of it, though I suspect most of it is done by professional intimidation - and I know that many journalists in the British press would like to report and it is the editors, unsure of their ground, who largely chicken-out.

John Stone
I suppose you are pretty sick of this on going cover up when year after year more and more parents have to suffer what we have all sufferd both in the USA and UK.
If you have freinds in the British Press who will talk to you of record it will have to be of record.
Ask them about me Maybe they will let you have a copy of the non existent letter.
Robin Rowlands We were on the Guardian Site at the same time - well for a while

This is the same NHS thru their NICE Committee that refuses to treat Alzheimers, Advanced Colon Cancer and other Cancers and looks for every opportunity to cut costs and patient care. I am skeptical about any study comming out of England as they are constantly in a "Deny Deny Deny" mentality. "If we don't recognize it then we won't have to treat it."

I grew up almost completely unable to engage in small talk. When I first learned of autism, I suspected I had something related. For what it’s worth, when I was younger I never met a child or adult with autism in real life, I only read about them. I certainly never met anyone like myself. Believe me, I was paying attention and if there’d been anyone I’d have known about it. I’d have been deliriously happy to know that I wasn’t the ONLY person like me out there. Oh sure there were shy people, and there were geeks, and there were people who only had a few friends and spoke rarely. But there was nobody else like me, ever, except perhaps when I was in my mid twenties there was ONE person, a draftsman where I worked. That was it, up until about fifteen years ago when I was in my mid thirties and I got online and discovered a few people with high functioning autism. (Most of those were NDs.. ack…) I met one of them once when she came from out of town to visit her family who lived near me. But until I was in my mid twenties, as far as I knew, there was NOBODY other than myself with what I felt sure must be some sort of high functioning autism.

I graduated from high school in ’76. If the rates of aspergers were one in one hundred, as they are now, then there should have been roughly twenty students in my high school besides myself with aspergers. Whether they were diagnosed or not, I would have seen them, I would have known of them. But they just weren’t there. There was one person and that was me and I was very much alone in a high school of over two thousand students.

Now they say that the Doctors have gotten better at diagnosing, or are just diagnosing higher functioning people more often. And yet two of my own children are so very much like I used to be. One of them was evaluated for autism when her gastro-intestinal specialist suggested she might have autism. Another child is so quiet a grade school teacher once suggested to me that he might have selective mutism. Neither one of them has received an autism diagnosis. This is fine by me as I think they will manage alright. I’ve managed alright and I feel they’re better off without the diagnosis than with it. But do I and a few others believe they’re on the spectrum? You betcha. Anyway, when I hear it suggested that Doctors are just willy-nilly diagnosing anyone and everyone who happens to be a bit quirky with autism, it makes me really angry, because I in fact believe the opposite to be true based on my own experiences and what I’ve heard from other parents. It’s really very HARD to get an autism diagnosis for a child.

No doubt in my mind that rates are increasing. Rates are increasing, it seems to me, for other things too. Things I didn’t see at all when I was young (early onset alzheimer’s, crohns and colitis, food allergies), or see nearly so much of (alzheimer’s). Other people see this too. Julie’s probably right. I hope so.

I am fifty, a grandmother, and a mother to two with autism. My oldest is 29, and my youngest 22. Two NT inbetween. When I was growing up, there was that ONE BOY, that I remembered in junior high that had a panchant for rocking in his chair, odd shape head (inflammation due to vaccination) and was made fun of. Perhaps the mother back then knew he had autism, and mainstreamed him as much as possible. We didn't know much back then about inclusions, that is for sure. But I will tell you one thing, when people saw him, we knew he had SOMETHING. That was the ONLY time I have ever seen a child with autism. I didn't know what he had, but it was SOMETHING. I forward now to today, in which I see a tsunami of kids, daughters who report (they are teachers) that kids cannot sit still, pay attention, take ritilin, even identifying kids on the spectrum. There is something definately going on. We havev sown an undoing, and opened a pandoras box. Our leaders are turning away because of this inconvenient truth, and often chum up to the very people destroying our future generations. Until that stops, the insestious lies, autism won't.

The report's author a Professor Brugha of the Department of Health Sciences at the University of Leicester, said:

Because of the very nature of ASD, undiagnosed adults are far less aware of the way in which their behaviour is different from other adults
---------
So they were autistic as children, grew up in the school population, had no interventions or treatments yet things were so "normal" that neither they nor their parents were aware they were in any way different. Is that really plausible?

Thank you AoA for reading the news for me, so I can spend the time caring for my non-verbal, still not independent on the potty 12 year old son. I don't want to read the news, anyway--stuff like this makes me ill. I'm now waiting to hear that Big Pharma has come up w/a drug that "cures" autism...so I can keep my son far away from it.

ASD in the Garden of Eden-- Adam was obsessed with apples and OCD is now ASD? So now the TV character "Monk", Howard Hughs, Hitchcock (fear of eggs) and the actor John Malcovich (fear of antique furniture) are on the spectrum?

I've been in education for 30 years. I have not met an autistic child until some time in the last 5 years. Now, I can name several children affected,including one I love because he is my grandson. Children with ASD are, no doubt, more prevalent now. The problem is that many people don't face the facts until the facts hit them in the face.

Fortunately, I am old enough to remember a time when there were no children around that were hyper, running around out-of-control, and oblivious to socializing. When I was a child, a child whispering in class was a big deal. Now they are biting, hyper, and the poor teachers struggle with many behaviral issues. It's not just autism, most kids seem less calm, less able to focus.

It is my sincerest hope that this study serves as nothing more than a catalyst for the population at large to begin (finally) getting outraged about Autism.

It's one thing to be on the inside of the controversy and get used to having your intelligence repeatedly questioned for simply using evidence that documents what happened to your child to draw conclusions about how and why it did.

You may never "get used" to it per se, but at least you're not surprised by it after a while...the name calling, condescention, the lack of civility for having a differing opinion over the quality, quantity and objectivity of the science that says your evidence and documentation is wrong.

You learn quickly the line in the "intellectual" sand has been drawn and you are now standing on the wrong side.

But for people who aren't directly involved with Autism and thereby forced to take a stance in said sand, the sting of such a study serves only to insult them as well, I'm sure.

Because if there's one issue about Autism that anyone my age agrees on, it's that there's more of it. We may disagree on why that is or how it happened, but even those who believe some cases may have flown under the radar still acknowledge there's an increase. It frightens them.

To imply as this study does that now not just us parents, but rather the population at large has been completely unaware that 1 in 100 of them has been Autistic for all of eternity is perhaps finally taking all of the coincidences of Autism just one too far.

Anyone over the age of 30 knows they didn't know anyone with the kind of Autism our children have. We can use our family trees to go back as far as they reach and prove it. It wasn't there because we just failed to recognize it; it wasn't there because it wasn't there.

Thankfully, the public will now get a taste of such stupidity being slung their way, forcing them to draw their own conclusions.

A) They can believe they really are memory-challenged and just don't remember all the autism around them, in their families, their neighborhoods, and their schools. (They imagined its absence.)
B) They can believe doctors are totally and completely inept at diagnosing Autism and always have been. (They overlooked its absence.)
or
C) They are being manipulated.

Any answer you choose isn't good, because even those who would like to believe there is no more Autism than always has been are left with sorry conclusions: they can't trust themselves and their doctors are idiots.

Which would logically make them seriously consider answer C: They are being manipulated.

Hmmm...I'm an idiot, my doctors are idiots, we're both idiots, or I'm being lied to. Huh? Wonder what I'll pick?

To take this study at face value (impossible to do this without holding one's nose and crossing one's fingers), if they say they've identified 1/100 adults with ASD and all of these adults (though some of these "adults" were as young as age 10...but anyway) had aspergers or high enough functioning autism to respond and fill out questionaires-- isn't this a strange admission that autism has grown far worse over the years? The bulk of the current autism epidemic includes severely effected, low functioning children.

In the end, I don't believe for a minute that they've actually identified 1/100 adults with conditions comparable to today's child autism explosion. I've seen evidence that psychiatrists are encouraging the exploding population of psychiatric drug-injured adults and adults with early onset alzheimers to claim an autism diagnosis, both because autism is such a druggable dx and in order to "come to the aid" of their industry sponsors by making up for the missing cohort of adults with autism by padding the ranks.

And that's another point-- with the numbers of adults taking brain damaging drugs for anything from restless feet to headaches and with alzheimers doubling every twenty years (and having earlier onset) and with environmental schizophrenia rising exponentially in the past 150 years where do they draw the line between conditions that resemble each other in so many key ways (especially when the testing tools are sloppy)? And isn't the frequent "indistinguishability" wildly convenient for those responsible for all these parallel and perhaps overlapping epidemics-- the chemical polluters, the vaccine and drug makers? The perfect crime.